Latest news with #WilliamsSyndrome
Hamilton Spectator
3 days ago
- General
- Hamilton Spectator
Hundreds attend inclusive UnBirthday in Brantford
Nearly 800 people attended the annual Friends 4 Kindness UnBirthday Party at Mohawk Park in Brantford on Saturday, July 12, 2025. Nicole Callander, founder and president of Friends 4 Kindness, first started the event back in 2018 when her daughter Kaitlin Coghlin was about to turn 18, and what began as a way to cheer up her child, quickly snowballed into something bigger. Coughlin has Williams Syndrome, and at the time, the Grade 12 student was feeling upset that she wasn't getting to experience the same milestones that other kids her age were. 'When you're an individual with disabilities, you stay in school until you're 21, and so, we have a daughter that's a year older than Kaitlin, and the year before, she was seeing her sister experiencing all those big moments you get in Grade 12; things like graduation, prom, and university acceptance letters, but she wasn't getting any of those milestones and she kept asking, 'is it because I have no friends?' I tried to explain to her why but she was still really upset,' recalled Callander. 'Her birthday is in July and so that January, I went on social media and asked my family and friends if they could cards between then and her birthday so that when all these milestones were happening, she would get mail and feel the love.' The mother never expected what would happen next. 'It went viral and we got 6,000 birthday cards from 34 countries, every province, and every state. We actually took a trip to Scotland, and somebody stopped us in the mall because they recognized Kaitlin and even they had sent her a birthday card,' said Callander. 'There were just so many cards that we had to start a group called Kindness 4 Kaitlin because people started messaging me asking if we got their gift, so we started making videos of her opening everything. But with that, came hundreds of messages from families saying things like 'I just sent out 30 birthday invitations, nobody showed up and we're sitting at the restaurant by ourselves,' or 'the whole class went to this party and my kid was the only one who wasn't invited because of their disability.' Relating to the struggles that other parents and children were experiencing, the mother wanted to try to find a way to give back. 'For Kaitlin's 18th birthday that summer, I decided I would rent some pavilions at Mohawk Park and invite that community for an 'un-birthday' so that whoever had never been to a birthday party, could be celebrated together,' she said. 'Two-hundred people came from as far away as Ottawa and even the United States just so that their child could experience a birthday.' Callander said that the goal was to really create an inclusive event where everyone was welcome. 'People always say to me, 'why are kids so mean?' and personally,I don't think they're mean, I think they sometimes avoid people with disabilities because they wonder, 'how do you talk?' or 'how do you eat,'' she said. 'So for this party, I really wanted the community to see that our friends can have fun, and it's not too much work. They might be different, but it's easy. So now it's become a thing where we have a big social, and inclusive event, where the community and our friends can come together.' During the party, parents and their children could pick up an UnBirthday passport and collect stamps for all the stations they visited, and at the end, they got to walk away with a loot bag (500 of which were gone in the first hour-and-a-half) and their selection of prizes. All around the main Mohawk Park pavilion, there were plenty of activities to enjoy. From the petting zoo to the bouncy castles, the ever-popular train ride, princesses and superheroes, lawn games and bracelet making, bucket drumming and rock decorating, quiet sensory areas and a photo booth with props, there was truly no shortage of fun to be had. Callander said that none of it would be possible without all of the volunteers and the kind donations. 'There's only a few of us that puts it all together, and it's 100 per cent volunteer run. The bigger it gets, the more the community has gotten involved and that just means that our friends mean a lot to them,' she said. 'It just goes to show you that people want a place where they truly belong and to see that the community wants to make that happen is really special. I'm just overjoyed to see too, how many people showed up given that it's a really busy weekend with the Special Olympics going on in Brantford. Noting that Kaitlin turned 25 on Friday, July 11, Callander said that her daughter has made her a better person, and that she wouldn't trade her for the world. 'When your child is born and you get the diagnosis, it can be really devastating because it feels like all of the things that you dreamed for your kid have gone out the window; the graduation, the prom, and all of those things that prompted me to start Friends 4 Kindness, but then you see all of this,' she said motioning to the party. 'None of this would have happened if I didn't have a daughter with special needs, right? I would never have recognized any of the silos in our community and the systemic barriers without her. Honestly, I feel like my life is way more fulfilled, and I am way more unconditionally loving than I probably would have been if I didn't have her. I am truly the best version of myself because of her.' Kimberly De Jong's reporting is funded by the Canadian government through its Local Journalism Initiative. The funding allows her to report rural and agricultural stories from Blandford-Blenheim and Brant County. Reach her at . Error! Sorry, there was an error processing your request. There was a problem with the recaptcha. Please try again. You may unsubscribe at any time. By signing up, you agree to our terms of use and privacy policy . This site is protected by reCAPTCHA and the Google privacy policy and terms of service apply. Want more of the latest from us? Sign up for more at our newsletter page .
RNZ News
08-06-2025
- Entertainment
- RNZ News
Hello to everybody: Aotearoa's friendliest artist Sallie Culy
If cities can be lonely places no one told artist Sallie Culy. A familiar face on the streets of inner city Pōneke Wellington, Sallie counts many people she has met a friend. Its an approach to life summed up in the title of a book of her drawings recently published: Hello to Everybody . Sallie has Williams Syndrome, a rare genetic disorder that causes developmental and learning disabilities. But she has turned impediments into advantages. Making it her business to make her city a friendlier place, she has also become celebrated for her art. Felt pen drawings of friends, family and celebrities, ranging from Elton John to Beyoncé, Culy exhibited in December with up and coming dealer gallery Envy, and in 2022 her drawings were selected to be blown up big and lit for three months as a Courtney Place Lightbox public art project. As an artist Sallie has a naive graphic style more familiar from childhood, but that belies how strong her bold wiry use of line and colour are. It's a style that arguably also makes her work appealing to everybody. Smiles welcome us everywhere, reminding us of the joy in people around us. Hailing from a family of skateboarders and artists, skateboarding is also a common theme - Sallie has even been called a local celebrity at Waitangi Skate Park by Wellington City Council. Hello to Everybody has been published by Bad News books and is widely available. To see examples of Sallie's work and the book go here .
ABC News
03-06-2025
- Health
- ABC News
Families love the Longreach way of life, except for a lack of disability services
Adam Ballard is somewhat of a local celebrity in his small outback Queensland town. The Longreach local goes everywhere with a smile, helps the local footy and race clubs, and is a rodeo fanatic. Adam was born with Williams Syndrome, an intellectual disability that requires consistent care. His family has lived in the area for generations and, over his 34 years, Adam has enjoyed the upside of living with a disability in a rural town. "He's so safe. He's got a good life here," Ms Ballard said. But now his 67-year-old parents are planning for when they are no longer around to care for their son. "It's the same for any parent of a child with special needs, that's their greatest concern," Ms Ballard said. Reluctantly, the Ballards have decided their only option is to leave Longreach and set Adam up in Rockhampton, 700 kilometres away. "We've all been born here [in Longreach]. We've lived our lives here. But you do what you have to do," Ms Ballard said. The problem for people in the bush, like the Ballards, is that they have limited choice and control over a permanent independent living situation for their child. Rentals in Longreach are already scarce and there are few registered NDIS providers that have housing. Determined to tackle the issue, Ms Ballard formed the Outback Independent Living (OIL) group in 2019. It has become the peak body and support service for disability in Winton, Longreach, Barcaldine, Blackall, Boulia, Birdsville and smaller towns in between. The vast area spans thousands of kilometres, and of the 10,500 people who live there, 955 have a disability and 196 have an NDIS plan. OIL's vision was to build an "outback village" with disability housing and assisted living. Despite strong support initially from parents and stakeholders, the idea has not come to fruition primarily because of a "catch 22" whereby few NDIS participants have designated home and living supports on their plan, Ms Ballard said. "And then people wanting it don't bother getting it put in their [NDIS] plan because there's no accommodation here." Kathy Ellem, a disability and social work researcher at the University of Queensland, said the government needed to rethink how the NDIS operated in rural areas. "You can't just plant what works in a metropolitan area and hope that it works in a rural area too," Dr Ellem said. "Governments need to provide block funding. The Queensland government said it contributed $2.5 billion annually to the federally run NDIS and would continue to work with Canberra to design supports as recommended by NDIS reviews. Federal NDIS Minister Jenny McAllister said the government was engaging communities to trial new ways of delivering services and addressing gaps. "We want all NDIS participants to access the reasonable and necessary supports they need, no matter where they live," she said. Brisbane-based Katie Grehan, who has been lobbying for people with disabilities in the bush since joining OIL in 2022, said having the right supports in an NDIS plan was crucial. She said "purpose-built villages" were outdated. "Have them living in community, in a home that they either own themselves or they rent, so they have control of the asset and their NDIS plan funds the supports." Beyond housing, another hurdle in the remote region is a startling lack of recreational activities or group programs that support disability participation. "In Brisbane, you can go to a community centre or service providers. You might want to do dance classes, swimming lessons, a cooking class, an art class. You can attend those services on a daily basis," Ms Grehan said. That is the reality in Longreach, which is a hub for smaller towns that get by with less. Longreach resident Daisy Walton, 38, who is legally blind and has autism, is eager for more options to enrich her life. "Like having Vision Australia and Guide Dogs [Australia] if they ever decided to set up a little office here. Even Autism Queensland, as well," Ms Walton said. "It would be nice if it happened, but I don't think it will. [There's] just not enough population." Her mother, Michelle Rose, said the disparity between the bush and more populated areas was distressing. "We've had a lot of families move away, which is a real shame," she said.
CBS News
03-06-2025
- General
- CBS News
New Penn Med center in Philadelphia aims to help people with Williams syndrome, develop better treatments
A new specialty center opened Tuesday at the Hospital of the University of Pennsylvania in Philadelphia. It's one of the first in the country to help children and adults with Williams syndrome, a rare condition that makes them extra friendly. "This center is going to be life-changing for families," said Jocelyn Krebs, director of the Armellino Center of Excellence for Williams Syndrome. For Krebs, this work is personal. She researched the disorder for decades and then had a child born with the condition, which she calls "an insane coincidence." "Suddenly I went from a scientist who understood Williams syndrome very deeply in one way to a mom trying to figure out, what do you do with a kid that has these various challenges?" Krebs said. The center includes a sensory room with different lights and playful distractions to ease anxiety, which is common for people with Williams syndrome. Krebs' son Rhys has intellectual disabilities, a primary symptom of Williams syndrome. In collaboration with Children's Hospital of Philadelphia, the center will provide comprehensive care and research for adults and children with Williams syndrome, which often comes with severe heart problems and social challenges. "A behavior that is very characteristic of Williams syndrome, sometimes called the cocktail party syndrome because of it … is this incredible friendliness, hypersociability," Krebs said. "And what it really is is just a completely uninhibited social approach." With the right kinds of early intervention, people with Williams are able to thrive. This center will help assure that can happen and look for better treatments and new hope for brighter futures. An estimated 20,000 to 30,000 people in the United States have Williams syndrome, which is diagnosed with genetic testing. Learn more about the center on Penn Medicine's website.
Time of India
17-05-2025
- Health
- Time of India
What is Williams Syndrome? The rare condition that makes people unusually friendly
Picture striking up a conversation with a stranger on the bus and immediately feeling like they are your best friend or walking down a busy street feeling a wave of warmth, affection, and trust toward every single person you pass. For people with Williams Syndrome (WS), this isn't unusual, it's how they experience the world every day. A rare genetic disorder , Williams Syndrome, affects around 1 in 7,500 to 10,000 people worldwide. It is caused by the deletion of a small segment of chromosome 7, which contains 25–27 genes. This deletion not only leads to a unique personality marked by extreme empathy and sociability but also a range of symptoms, including distinctive facial features, developmental delays, and cardiovascular issues. Often described as the 'opposite of autism', people with Williams Syndrome are inclined towards forging instant connections with even strangers. However, on the flip side they fail to maintain friendships and social connections over a long period of time, which leaves them isolated. They are highly verbal, overly trusting, and eager to please. While these traits can be endearing, they can also make them vulnerable to manipulation and social isolation , especially as they struggle to maintain long-term friendships. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like 여성 갱년기, '이것' 몰라서 20kg 살쪘다..(+이유) 현수맘 더 알아보기 Undo "It's very easy for someone to fool a person with Williams Syndrome and take advantage of them, because they are so trusting," Alysson Muotri, a professor of paediatrics and cellular and molecular medicine at the University of California, San Diego (UCSD) told BBC. "They give themselves to anybody without prejudice, which seems like a lovely trait, but at the end of the day there is a reason why the human brain evolved to be a little bit suspicious of a new person. You don't know if that person is there to hurt you or to love you, and they [a person with WS] cannot make that distinction," he says. Symptoms of Williams Syndrome WS is usually diagnosed in early childhood, often due to heart problems like supravalvular aortic stenosis (a narrowing of the large blood vessel that carries blood from the heart). Other common features include low muscle tone, delayed milestones like walking or sitting, dental abnormalities, and endocrine issues such as early puberty or hypothyroidism. Many also have mild to moderate intellectual disabilities, although verbal abilities are often strong. The genetic abnormality that makes people over-friendly Interestingly, researchers have begun to explore what makes people with WS so uniquely social. The gene GTF2I, often missing or altered in those with the condition, may play a central role. Studies on animals and humans suggest that this gene influences sociability. In mice, for example, a lack of GTF2I results in increased social behavior. In contrast, having extra copies of the gene is linked to social withdrawal and traits associated with autism. One theory suggests that the deletion of GTF2I disrupts the brain's myelination process. Myelin acts like insulation for neurons, speeding up communication between brain regions. Without proper myelination, the connection between the amygdala (which processes fear) and the frontal cortex (responsible for decision-making and social judgment) weakens. This may explain why people with WS don't exhibit the typical hesitation or fear around strangers. Boaz Barak, a professor at Tel Aviv University, is currently studying how clemastine—a common allergy medication that enhances myelination—might help treat WS. Early trials are underway, with results expected in late 2025. Beyond myelin, Muotri's team has discovered that neurons in people with WS form more synapses—connections between brain cells—than average. This neural 'overconnectivity' could explain why they experience such intense social reward from meeting new people. Their brains may release dopamine—the feel-good chemical—more readily in response to social interactions. Other factors may include elevated levels of oxytocin, the so-called 'love hormone,' and energy deficits in brain cells due to dysfunctional mitochondria. Together, these biological quirks paint a picture of a brain wired for connection, but not always equipped to navigate its complexities. Still, many families of individuals with WS emphasize the joy their children bring to those around them. 'We're not trying to erase their personalities,' Barak told BBC. 'We're simply offering tools to help them navigate the world more safely.' Are dating apps only for hook ups? One step to a healthier you—join Times Health+ Yoga and feel the change
